Three Lessons From A Life Threatening Disorder

As some of you know, my son has a rare blood disorder. It is called Hemophilia and while I am not a doctor, he is (at its most basic) missing a protein in the clotting process so his blood does not clot without very expensive medication which I infuse him with several times a week. There is risk of internal bleeding which can be spontaneous and hard to detect. While it doesn’t sound life threatening, it is, if not managed and monitored.

Our Hemophilia community is small, passionate and opinionated. We have to be. Most doctors, especially in the ER, have had little to no experience or knowledge of hemophilia and what it takes to properly care for one who has it. We have learned to stand up for ourselves and question everything. Here are some other things I have learned in the process:

Lesson 1: Get Over Yourself:

This could be so much worse. I have a roof over my head, a job that provides insurance, I live in the United Sates where anything is possible. I started listening to life coaches and motivational speakers on my commute and my world changed. Some people are born with a sense of gratitude and humility, I wasn’t. I had to listen and learn before I could grow. I stopped complaining about first world problems and changed my frustrations into fascinations. Complaining is a hard habit to kick, but you have got to do it. It is such a waste of time and energy. If someone cuts you off in traffic, think how lucky you are to have the opportunity to own a car. If your call drops mid sentence, think how fortunate you are to be born in a country that offers cell phones. If it isn’t enough to be reminded of how fortunate you are, turn on the news. There are millions all over the globe that have to fight for a scrap of food, clean water or a makeshift shelter. So really, get over yourself already.

Lesson 2: You have the POWER to CHOOSE how you see the world.

I have learned, finally, that I have the power to decide how I am going to see the world. I am so fortunate to have such a handsome, charming and fiercely intelligent boy. Whenever I go to his check ups, I see so many beautiful children with conditions that are ravaging their bodies and minds. My heart goes out to those moms, whose eyes I meet as we pass each other in the hallways. I will never know how they are feeling, but I do know how I felt in the beginning, and it sucked. I had a choice though, let it consume me and have a pity party or educate myself, learn and grow? I admit, I cried a lot in the beginning, but never in front of my son. Then I put on my big girl pants and got to learning and living. So now, as I pass another mom in the hallway, I do not feel bad or sad for them. I see their strength and power in these women who have grieved, cried, sacrificed, and then decided to create a kick ass life for their kid and themselves. Everyone is on their own journey and it is totally up to you to figure out how you are going to travel.

Lesson 3: Just Go For It

Now here is the biggie: I learned to follow my Big Ideas and Go For It. In my desire to help other new moms, I just put myself out there in the community. I went to all the meetings I could find (and they are hard to find). I never said no to anyone who wanted to talk or when people ask me to help with events or speak in public. I am TERRIFIED of speaking in public, but I have found that I actually enjoy it – after it is over.

I was speaking on stage about an idea for a podcast about Hemophilia. I remember distinctly, looking at my husband in the audience, while the idea was forming in my head and spilling out of my mouth. There was a frozen moment when we both realized that this was going to happen and although it was scary, we both saw the need for something new in the community. Holy crap, is it scary, but because I really care about what I am talking about, I thrive on the energy that comes from it. I know that if you are genuine and come from a place of giving, that being afraid it is not a bad thing. Just go for it, if it fails, you are one step closer to a success.

It took a long time for me to really absorb these lessons enough to do something with them. Intellectually, we all know these words and concepts, but why have we all not learned them yet? Don’t wait for a major life upheaval before you start doing what you want to do . Be who you want to be RIGHT now. Don’t wait another second. Seriously, get off your ass and do something.

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6 Comments:

Fantastic Matti!! Standing up and gracefully yet fiercely managing a bleeding disorders is a task to say the least. After a bit of fine tuning we all end up managing it to the best of our ability. Your presence in community is truly needed. Your awesome!!!! Much love♡

Matti! ♡ ♡♡♡♡♡♡♡♡♡♡ I’m full of tears and smiles, all at the same time! Beautifully written post! You really knocked it out of the ballpark with this one! I feel you 100% and I am so honored to know you! Thank you for this post, Matti, this is one I’m going to refer back to often. xoxoxo